Every day I experience life in the world of healthcare IT, supporting 3000 doctors, 18000 faculty, and 3 million patients. In this blog I record my experiences with infrastructure, applications, policies, management, and governance as well as muse on such topics such as reducing our carbon footprint, standardizing data in healthcare, and living life to its fullest.

Thursday, November 30, 2017

I'm working on a series of "Dispatches from a Broken Healthcare System" based on my personal experience as a care navigator. I've already written about a frustrating care management experience

Today's blog is a guest post from Amy Stiner, a healthcare expert and single mom from the Pacific Northwest. She reflects below on what should be a simple task - transferring records between institutions in the age of Meaningful Use.

"My name is Amy Stiner and my healthcare consulting career has taken my 6-year old son, my mother, and me progressively across the country. Over the course of Grant’s sweet little life, he has been a patient at 8 nationally recognized academic health systems. In a sentence, my son has a severe form of ADHD with an extremely severe feeding disorder without a clear etiology. He is progressively starving to death.

We have experienced healthcare delivery in a variety of health systems in cities that are inclusive of Boston, St Louis, Chicago, Honolulu, and Seattle. Even exotic, Eau Claire, Wisconsin. After leaving Boston in 2011, things have gotten messy with medical records and transfers of care.
Based on my experience, the two biggest contributors to the delays in transitions of care across America have been:1)Medical Record Requesting2)Transfer of Care Handoff/Provider Referrals/Conversations

By far, the biggest offender is the medical records requesting process. You may be wondering - how is it possible that requesting medical records is creating such massive delays in care? The answer is not straightforward, but rather a sequence of events that delay initial appointment scheduling. This exercise has become a series of hoops to jump through, ultimately obtaining that ‘prized appointment’ with a specialist or sub-specialist. I am a mother and clinician who is constantly pursuing the ‘gastroenterology and feeding clinic appointment merit badge’.

The Mission Should I Choose to Accept It

Every time I attempt to get him established with a new health system, I am more often met with a brick wall of obstruction at the entry point for care rather than a welcome mat. The initial appointment conversations (90% of the time) go something like this:

“Before your son can be scheduled—we need to have a copy of (1) the medical records and (2.) referral/phone call person to person conversation from your former physician.”

Hearing that sentence alone is enough to make my voice raise a whole octave. They know and I know that ‘patient first care’ is never a part of that sentence. I have been in this industry long enough to know why they have made it my problem to chase information because providers can’t seem to obtain it efficiently either. If my child’s condition worsens or if he is running out the prescription formula that he needs the health system doesn’t suffer but my son, my mother, and I do. Delays in patient care hurt the whole family.

A Convoluted Process of…Processes

Once again, I am being given my marching orders by the new patient in-take person. Go find all the records. Go chase your referring physician for a physician to physician phone call. “Don’t call us, we’ll call you when we get around to it after we receive everything and only if we remember to look for them and don’t lose your records first.” Its like a Monty Python sketch. It would be funny if it wasn’t true.

I hang up the phone, fighting back swear words and tears. I know that I don’t have the time during a work day, while in a different time zone, to chase these things. That the evening, when I should be reading a bed-time story to my son or trying to get him to take in a few more life sustaining calories, I will instead be downloading 8 different multi-page medical request forms to my PC. Then I’ll remember that I don’t think I have enough ink in the printer for all the pages. One academic health system (with Nobel Prizes in Economics) has three (3) pages of instructions on how to fill out the two (2) page request form. It then follows those instructions up with all the different postal addresses that the form will need to be copied and mailed too. Yes. Postal mailing the same form in different envelopes to different locations for the same health system. Ironically, we are all not realizing economies of scale in this process.

Each form makes me carefully select all the locations of patient care within the health system, where my son has been seen. Why can’t they just aggregate it based on his account number or something and magically pull it all together? They all make me choose if I want notes, records, images, mental health, reproductive health, and more. I always anxiously look for the “ALL RECORDS TICK BOX”—EVERYTHING!!! I WANT EVERYTHING!!! There isn’t a magical everything box, so I resentfully tick mark each individual little box for everything.

I hurriedly complete this information on 8 different multi-page forms for each health system and the instructions sound like a lecture from a teacher in high-school “If the information provided is incomplete records will not be sent.” I really hate this process and I suddenly realize I don’t have enough postage stamps to mail the ones that need to be mailed. I now make an unplanned trip to the post office. I am angry, and the printer is beeping as I walk out the door to get stamps.

The Options Aren’t Impressive and Not User Friendly

Along with all the above I am asked to select the media by which the health systems will send and receive the information. Disc? Paper? Images? Some simply tell me what the doctor is going to get. That’s it. The doctor doesn’t get a choice—the doctor is going to get paper or a disc and hopefully that provider can just deal with the paper or disc that is being sent. I can’t use the disc, my PC doesn’t have a disc drive. I pray the physician has one.

Receive a paper copy of the information myself? I must pay for it. Lord only knows how many pages there are? Some health systems charge per page. Why aren’t these items in the portals or sent in an electronic format? It is 2017 and surely healthcare technology should be adopted to handle this seemingly simple task?

The Mystery Treasure Hunt Ensues

I have never seen the full records from any of the facilities that have cared for my son and have no idea what is already existing in each one from a prior provider. I assume they are a mess. Each move, I have requested medical records from every single place just to be on the safe side (to get everything). In theory there should multiple copies in the record from each past health system. Based on recent experience, I imagine they haven’t received much because I had to do this whole thing twice, and only after that duplicated process did we receive one single copy from one institution in Chicago. Although we didn’t know initially if anything had really been received.

After my insistence, a kind-hearted network of health system leaders formed a medical record search party. They looked for anything sent from 8 institutions with my son’s name on it. “OH, WAIT! WE FOUND ONE OF THEM!” cried the search party. The HIM department didn’t know what to do with the information—because they had no existing record to put it in. It was set aside until a record was started. (See how that worked?) We are delighted for the recovery and it calls for a celebration. I bought a bottle of wine and my mother was ecstatic on all fronts.

The Result

One year later, my son finally had his appointments after the initial step of the process was begun, the result of delayed records and missed phone calls between physicians with never ending phone tag. The outcome of those appointments now has us planning a return to the East Coast. His weight loss is worse than last August 2016, and his level of care involves more complexity in delivery. The silver lining in all of this, is that I have an amazing son and I am 100% committed to this marathon in a race against time for him and others. There are other parents/care givers who are running the marathon with less time left than we have. What will days, weeks, and months of delayed care have cost all of us because of dangerous medical record request and referral processes we have in place? My little guy and I are eternal optimists. We believe that those of us in healthcare can and will do better. Immediately. "

Monday, November 20, 2017

My blog readers must think I've abandoned them over the past few weeks. I apologize for the whirlwind of October and November. With the BIDMC-Lahey merger planning and the new cloud hosted Meditech go lives of my day job, plus the usual Fall conference commitments, and my new work with the Gates Foundation, blogging has fallen behind.

The Gates Foundation has a bold plan for Africa - unifying the health records of the continent using biometrics, simple phone apps, and a highly resilient low bandwidth cloud that includes data integrity components based on blockchain.

Here's the use case - patients with HIV are medicated and then monitored for viral suppression using Viral Load lab tests drawn 6 months after therapy begins. This process requires accurate patient matching between clinic visits, which might occur at different locations and with different care providers.

In the US, exact matching of demographics works about 60% of the time. Probabilistic models work about 80% of the time. South Africa has a similar experience. The end result is that many lab tests are redundant and wasteful. Measuring outcomes is challenging. Closing the loop for followup may be impossible. Biometrics can improve matching to 99%, improving quality, safety and efficiency.

South Africa has a "90/90/90" national strategy - 90% of HIV positive patients should know they are HIV positive. 90% of those should be on anti-retroviral medication. 90% of those should have documented viral suppression with viral load tests.

I've joined an amazing multi-disciplinary team that includes the Gates Foundation, biometric engineers, app developers, usability experts, cloud database/blockchain innovators, and security professionals.

Over the course of 5 days we met with government, academic, and industry leaders throughout South Africa to plan a 2018 pilot of a nationwide patient matching strategy. We've devised objective metrics for success that include improvements in patient and provider satisfaction as well as reductions in total medical expense.

I've written about the Perfect Storm for Innovation. South Africa has all the ingredients - senior leadership of top government healthcare leaders, a guiding coalition of people to oversee the work, appropriate resources to do the work, and an urgency to innovate. I'm hoping that the work in Africa will demonstrate how a nationwide patient matching strategy can work, serving as a model for the world, including the US which continues to struggle i.e. CHIME cancelled its patient matching challenge

The South African people are amazingly kind and helpful. The National Health Laboratory Service has a best in class repository of lab data for the entire country. With Gates funding as a catalyst, I'm convinced we can make a substantial difference in 2018.

In addition to visiting clinics, labs, data centers, hospitals, and IT departments, I had the opportunity to visit an animal sanctuary near the border of Botswana. It's just like Unity Farm Sanctuary except that instead of pig belly rubs, I gave lion belly rubs. An amazing experience.

Starting next month, my daughter Lara will take charge of our instagram, Facebook, and Twitter feeds, providing daily updates about the Farm and Sanctuary. As we approach winter 2017, we can officially declare that the farm and sanctuary are now fully built and we're transitioning to daily operations. We have over 250 animals at this point, all kept healthy, warm and fed every day. Here's a summary of the past month, as told in pictures.

From mid October to early November, the swamp maples, oaks, and poplar take on shades of crimson and bright yellow, turning Unity Lane into the kind road less traveled that Robert Frost wrote about.

Palmer the turkey surveys his empire as the leaves begin to fall. 11 more turkeys have arrived at the Sanctuary and they have designated Palmer as their alpha male.

The five mini-horses weigh about as much as a Great Pyrenees and have all adapted to their new homes. Goldie, an 18 year old stallion, was recently gelded and he'll soon join the others in the main mini-horse paddock

We've finished the cider making for 2017, having harvested 55 different types of apples from the Unity Farm orchard. Our hard cider this year will be a combination of Golden Delicious (sweet), McIntosh (tart), and Macoun (aromatic)

As the temperatures drop below freezing, we're working extra hard to keep every creature fed from the bounty of the fall harvest - apples, pumpkins, and lettuce from the hoop house

We've had our share of animal medical issues - an alpaca with a jaw abscess, a mini-horse with a food impaction, and chickens with eye infections. All have been treated appropriately and thus far, they're recovering. Mocha, the dark brown alpaca is eating again after antibiotics and pain medication for her jaw.

My recent trip to Africa for the Gates Foundation included animal sanctuary visits - just like Unity Farm they have "horses" and guinea fowl.

And pigs with slightly bigger tusks than Tofu the potbelly pig

By Thanksgiving, every night will be below freezing on the farm. The heated buckets are hung, the animal buildings are fortified against the elements, and the food stores are replenished. Let it snow, let it snow, let it snow.